Sunday, July 29, 2012

The Tiredest

Had a crappy couple of days, starting Friday. The tired to end all tireds. Some of it could be that I think I just need more rest and to be more aware of pacing myself than normal people. But I haven't allowed much down time in my schedule of late.

Remember when I complained about the toddler getting up at the crack of dawn? Well, now I'm going to complain about her wanting to sleep until 9am.

It's not that I'm never happy, it's that her schedule shifted from one where nothing happened until after noon to one where we need to be out of the house well before 9am.

So both of us are getting up much earlier than we would like. Truncated sleep for everyone!

FYI not a recipe for much rest.

Worse, the toddler is a not a morning person. Compound that with the fact that I'm generally not fully awake until about noon and we are a horrible pair in the morning. She's a screaming mess. She stomps through the house, crossing her arms and going 'humph' alternated with ear shattering shrieks which are the toddler version of 'eff you.' No she will not brush her teeth or put on her shoes or eat her breakfast. No no no! Meanwhile I'm blinking at her blearily, ready to just go back to bed and hide.

We launch practically every day like this.

It's a miracle we arrive anywhere on time, but somehow I pull it off without losing what's left of my sanity.

By Friday I was ready to lie down and never get up again. I felt horrid. I fantasized about steroids even, followed by dreams of progesterone.

It's way too soon to tell if progesterone is going to be helpful, but I am interested to see what happens when I start it again.

When I was on it last, I deep cleaned a room which involved lifting a couch with one hand and removing carpet. The effort did not ruin the rest of the day--I went on to do everything else I wanted. I can't even contemplate that right now.

This weekend has been busy but I've also made sure to rest more than I've been, including sleeping in as much as possible. Yesterday we went blackberry picking again (the hubby was impressed with how little I screamed about the bugs this time). I rested for a bit after that and then we took the toddler to a small carnival followed by a trip to the grocery store.

I tried to stay up and watch the Olympics but ended up passing out on the couch--I just never amassed any good energy yesterday, the whole day I was pushing through jello, faking it but never making it.

Today is an even lazier day, with nothing planned. I think my energy is better today, but ask me again after I've had to actually get off the couch.

Support a Patient

Lost in the Desert

Patient Cliff Notes

I'm categorized as a severe persistent asthmatic* and I have a history of HPA axis suppression due to steroids used to treat the asthma.

Doctors miss the HPA axis suppression every time and actively fight me on it. I've had am cortisols of 1 and 6 and ACTH of less than 5, yet the doctors still can't get on board. The medical myopia and general lack of adrenal knowledge is horrifying.

How did I ever get diagnosed? I took premed classes for 2 years (during a health upswing) and figured it out.

I thought since previous rounds of suppression have been so well documented, I wouldn't have a problem again. I was wrong.

I've been fighting the current round of Secondary Adrenal Insufficiency since March 2010. It has eviscerated my ability to work and to function as a normal human being. Which sucks since I have a toddler who just wants her momma to play with her.

*eh... I bet it'll go back to moderate persistent, once the excitement of last year's hospitalization dies down.

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